As partisan politics dominate the health care debate nationwide, the United States Senate Committee on Health, Education, Labor and Pensions unanimously passed a comprehensive childhood cancer bill, co-written by Sen. Jack Reed D-RI, in late February. The legislation, called the Childhood Cancer Survivorship, Treatment, Access and Research Act, aims to advance pediatric cancer research, child-focused cancer treatments and childhood cancer surveillance while providing resources for survivors, Reed said in his floor statement.
Reed began working on the issue of childhood cancer after meeting a family whose son had passed away at age nine from neuroblastoma, an aggressive brain cancer. He first proposed legislation on the issue with the Caroline Pryce Walker Conquer Childhood Cancer Act, which was signed into law in 2008. The act created a comprehensive childhood cancer database for research purposes, which the STAR Act would reauthorize, Reed said. The STAR Act also aims to increase communication about treatment and research between physicians.
“Senator Reed included provisions to help improve care not just for those suffering with cancer, but also for survivors of childhood cancer,” said Chip Unruh, press secretary to the senator. As many as two-thirds of childhood cancer survivors will develop a serious or life-threatening illness such as secondary cancers or organ damage, he added.
Rebekah Ham, a Rhode Island resident, has personally witnessed the issues associated with suvivorship. Her daughter, Grace Carey, was diagnosed with medulloblastoma at age five.
“We’re so thankful for the treatment and medical care that Grace received, but it also had enormous consequences,” Ham said. “Her eyesight, hearing, growth, hair regrowth and some cognitive issues … have all been affected.”
Ham hopes the bill can address the need for a network to help survivors navigate their future medical and psychological needs. “You also have to think about how you’re in this community of kids and not everyone survives,” she said. “There’s going to be a bigger population of survivors as we move forward and they are going to have different needs than other people their age.”
Ham also stressed the importance of increasing opportunities for research. Grace, who has been cancer-free for ten years, underwent brain surgery at Hasbro Children’s Hospital in Rhode Island, followed by radiation proton beam therapy and chemotherapy at Massachusetts General Hospital in Boston.
“At the time, Mass General was one of five or six centers around the U.S. for proton beam therapy,” Ham said. “I really believe that proton beam therapy saved her life. And without research, that kind of therapy might not exist.”
While opportunities for research have grown, certain innovative treatments remain possible only in specific locations. Proton therapy is not available in state, and the Lifespan Hospital Corporation in Rhode Island signed a five-year agreement with Dana-Farber Cancer Institute to send patients with complex needs to the Boston hospital, as reported by the Boston Business Journal.
The STAR Act would increase opportunities for research nationwide, which would make cutting-edge treatment more readily available in state. One group working toward advancing research in Rhode Island is the Brown University Oncology Research Group, a division of the Alpert Medical School.
“Our goal and our mission is to provide Rhode Island residents and nearby residents the opportunity to remain in state for their care without compromising their ability to participate in novel, early phase cancer trials,” said Kayla Rosati, director of operations for BrUOG. The group, which researches adult cancers, aims to coordinate clinical cancer research for the University’s affiliated hospitals.
The STAR Act, alongside BrUOG, hopes to improve the lives of cancer patients and survivors.
“We need to make sure that health care professionals are able to provide the best follow-up care for these kids in their adolescence and into adulthood, no matter where they live,” Unruh said.